Sick, Puking, Hurting, Whining

Ok.  This is by far, by far, by far the worst week of tx.  Same pain in joints.  Same pain?  Oh hell to the no!  LOL  WORSE pain in joints with pegasys.  Esp hands.  But now that my hgb is still a little under 10, it is just kicking my butt more I guess?  Anyway, vomiting this time with the shot, flat in bed.  Using phenergan suppositories to little avail.  Managed to keep down the riba.

Has anyone ever vomited so much riba that they aren't getting a therapeutic dose I wonder?  that concerns me.  My best friend Val has come over to clean my smelly house, kitchen and bathrooms, so that's great, because I'm having huge olfactory hallucinations on these drugs.  Even the smallest smells make me puke, even if I am imagining them.  Keep smelling smoke and natural gas.  Nothing is on fire except my fever and we don't even HAVE natural gas, everything is electric.

Finally got the new more potent epogen yesterday so I gave myself the equivalent of what I used to get in an entire box in one vial.  Pretty cool.  So many fewer shots.  I  used to have to take five shots a week sometimes.  So this is nice.  Better site control and bruising to the tummy and hips.  Although I do use very small needles on the procrit and I get very little bruising that way.  I wish the fine people at pegasys could buy themselves a clue and use a more fine needle in terms of diameter although I notice the liquid in the pegasys is more viscous so maybe that's just not possible, but it definitely bruises me more.  I push in all injectibles warm and excruciatingly slowly and that seems to help me control site issues.  

But this nausea...  Its really doing me in.  How do you guys control it?  Pain I can either handle or take drugs for or whatever.  Nausea... man.  that's killin me here.  3 1/2 weeks down, 44 1/2 to go...

[Andiamo1]

Perhaps you have something else going on.  We often forget that we eat bad food and pick up stomach viruses.  I had nausea with Telaprevir, but not with SOC.   I ate ginger and drank ginger ale and it really helped.

Whatever it is, I hope you find relief from it soon.  I survived 7 treatments with interferon, but the nausea for Telaprevir almost did me in.

[alagirl]

You know.  Son just puked all over the living room.  And one of his college textbooks.  So I think you may have something there.  I think we may be sharing a stomach virus.  Joy.  Now my best friend Val is trying to clean that up and I hear her out in the living room retching.  Great.  Its a freakin comedy of errors over here.  Somebody should be filming us.  Now I'm puking and I have vomit from my son and best friend in the living room.  (rolling eyes)

I'm checking into a hotel.

[debnevada]

Poor girl.

i got lots of bugs that always exacerbated the nausea.

Can you get some 8 mg. Zofran? Dissolves under the tongue and works better than phenergan butt bullets

And by the way, I am honored by what you did.

love
deb

[alagirl]

gotta take the kid into rapid care anyway, can get zofran from him or my other doc pretty sure.  GOOD IDEA.  Thank you so much.  The other, happy to do it.  

[debnevada]

keep me posted, tell him or her that your fellow treater takes it, if it helps.

[jmjm530]

The nausea was my worst side effect and I'm sure it would have driven me off treatment had it continued much longer. Fortunatly, for me -- and most -- nausea only presents itself in the beginning and should be gone by week 12 if I remember correctly. And when it went with me, it was pretty much gone. The taste alternation/smell thing is another animal and can remain with some of us as long as we're on the treatment drugs. If cooking smells bother you, best stay away from the kitchen and have food brought in, etc. Zofran is the supposed gold standards for nausea but it just made me sleepy. Still, it has helped many. Also ginger -- anything ginger, i.e. tea, gingerale, ginger snaps, ginger root -- can also help with the nausea.

I forgot your exact numbers and rate of decline, but sounds like you may be heading toward transfusion territory fast. Hopefully, they're doing two (or more) CBCs a week at this point until you stabalize.

You have my support, and sympathy, and the fact you're still going to work is amazing and inspiring.

All the best,

-- Jim

[jmjm530]

Just wanted to reinterate what I said in another thread in case you missed it. Procrit usually takes at least 2-3 weeks to kick in, at least for many of us who suffer from hemolytic anemia on the treatment drugs. It may be that your faster response in the past is because your anemia was not caused by drugs like ribavirin. You only took your shot a few days ago, so things may not turn around right away. Now that I remember it, didn't  you say you were going to do a CBC today and your hematologist was already thinking about a transfusion? What happened? Lastly, try and keep that ribavirin down if you can, it's important.

-- Jim

[alagirl]

My doc came out to the house to see all of us.  Me, my son, my best friend, etc. Everybody puking.  Big picnic.  He did call in the 8mg zofran and some oral phenergan, just because I was out and needed more (I take it on a fairly regular basis).  Zofran was great.  I dosed the kid with one too because he was a little squeamish about the phenergan suppository.  The best friend did the phenergan but took me to get gatorade first for the kid.  Everyone has now reached some sort of equalibrium with their respective guts.  Can I get a good Hallelujah Amen from the audience?  
Thank you SO much for the zofran idea, it was a lifesaver.  I plan to keep it in my arsenal for the duration.

Jim, I am up to 9.9 hgb and 32 crit (last night's ER stats) from 9.1 and 27.7 on Tuesday.  This is probably just from the extra procrit I was dosing with all during this first three weeks.  So they didn't have to do any packed rbc's for me last night.  I am actually MORE exhausted though than I was when my count was down a little lower.  Hopefully my blood count will continue to rise with the addional procrit I am now taking.  We'll see how it goes.  I took my first 40k shot yesterday so I know it may take two or three weeks minimum to really get going, but at least I'm not losing ground anymore.

[alagirl]

Oh.  and I was really pleased with my doc.  He isn't all that familiar with zofran but I've had it in the hospital before so he knew I wasn't allergic to it, and he was willing to talk to the pharmacist about it and let me give it a try.  he's my primary care doc and I'm his only chemo patient but he said he's willing to learn.  He's the same doc who called experts to take care of my iron overdose (given to me by a rather stupid hematologist, not by him) a few years ago and followed their protocol for me successfully.  A pretty great guy actually.  He also doesn't ever charge me a copay.

[alagirl]

I live in a really tiny little Alabama town... My doc has become kind of a friend of the family.  

[alagirl]

Thanks! He is usually willing to help.  Sometimes he gets kind of obstinate though and we argue about my care.  In general.  Not just hepc.  Of course, I could argue with a brick wall, so... ;)

[Lady Lauri]

What a good friend your Val is !  My sister and I are like that (not fair her house being sooo much messier:}, but a friend to clean up your families puke.....is a good friend.
  Don't know a lot about all the shots, problems, procrit (stuff I won't get) but your only 3 weeks in and near transfusion??? How many times tx-ing are you (sure I have read, can't keep up!)
Now you CAN whine!
Hope it is a bug and feel better.

Andiamo...... 7-8 tx's......and again....God some of you just amaze me!

                                                                           LL

[alagirl]

1st time tx'ing.  Pre-existing anemia.  Just acquired the hepc on 7-1-07 (I asked for it before but they were out - j/k)

Seriously though, I did just get hepc.  I had negative tests in August, Dec, April and on 6-21 of this year.  Raped on 7-1.  Got sick about three weeks later, tested towards the end of August and was hepc positive.  Police pulled the guy's prison records and he is also hepc positive.  

Since I'm a geno 1b I am pretty committed to staying the course since I have a rare advantage in that I am getting to treat (getting to treat, ha!) early in the course of this disease and hopefully that will help me to SVR.

I was at transfusion level for fifteen years before procrit came along and then about four years ago when I was able to start taking it my life was so much better.  But having had that experience, I think this is doable, just not a lot of fun.

And my friend Val, she really is a peach.  It was like a bad tv show over here.  Me puking.  My son puking.  Her going to clean it up and then puking.  Then again, I took care of her cranky butt for three weeks earlier this year after she got her tonsils out so its her turn... ;)